Browse Items (161 total)

This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents…

Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer…

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…

This study is part of a longitudinal research aimed at analyzing the maintenance of negative emotional states in Rheumatoid Arthritis (RA) during the first 2 years of disease progression. The specific aims of the present study were to examine the…

Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the…

Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused…

Background/aims: Parents of children receiving palliative care experience incremental losses and feelings of grief. During the end-of-life (EOL), the dynamics of being confronted with the growing threat of losing their child while fulfilling…

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on…

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…

AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate…

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…

This study identified and explored the informal social supports that bereaved parents found helpful following the death of their primary school-aged child. Ten participants were interviewed using a semistructured interview schedule. Data were…

Bereavement care in critical care units should involve providing support and counseling for the family members prior to death, immediately after the death has occurred, and at least some follow-up in the future months. These are crucial moments: Once…

This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal…

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…

BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare…

This manual was designed to help hospices and other health providers develop primarily home-based palliative care services for children living with life-threatening conditions. We believe that the home setting often is theweak link in the palliative…

Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary…

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades…

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…

Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often…

OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological…

Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored…

BACKGROUND: Rheumatoid arthritis is a common, disabling, autoimmune disease with significant psychiatric sequelae. AIMS: We aimed to identify the prevalence of depression and anxiety in patients with rheumatoid arthritis attending hospitals, and to…

The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…

Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and…

The purpose of the current study was to document the course and 1-month post-bereavement predictors of both positive and negative psychological states in bereaved gay male caregivers for 3 years following the death of their partners. The results show…

This study investigated behavioural problems (as rated by mothers) in 38 children who had been suddenly bereaved of an infant sibling between 3 and 27 months previously. These children were compared with 40 children matched on age, gender, family…
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